Matthew has “innumerable” brain tumors from his genetic disorder Tuberous Sclerosis and has tried and failed all medications. He used to have up to 15 grand mals daily, along with every other type of seizure (he has Lennox Gastaut). He would seize for hours daily. He would regularly be in status and would require large amounts of rescue medications and/or frequent ER visits and hospitalizations. His neurologist even prescribed the medication they administer only in epilepsy units to stop status seizures for Matthew for home use. His neurologist is at a major medical center and has advised that Matthew is one of his most difficult patient’s to treat. He currently takes 5 meds in addition to the oil.
With certainty, I can say that Matthew is way more alert on CBD and has had an overall reduction of about 65 – 70% of his seizures since taking the oil. He is nonverbal, so he can’t tell us how he is feeling, but he has way more energy, is far more alert and is walking longer distances with support than he was able to. He is almost 32 years old and has been seizing daily without relief since he was 6 months old. He has multiple serious medical issues, but without a doubt, his seizure activity frames our entire lives – what we can do, when, how he needs to be supported (ie if he is having a lot of seizures, all plans are cancelled, or if he is having a bad day, do we need to carry around an oxygen tank and suction machine, which skilled person will be supporting Matthew or do we have to take time off of work and care for him ourselves, etc. etc). I am so happy for him and our family to have found a product that actually works for him. We have always tried anything that the doctor had suggested in an attempt to help him. Our doctors were all supportive of Matthew trying this new therapy.
This financial aid does allow Matthew to obtain a new treatment option instead of relying on the old ineffective ones. We have been amazed at the effectiveness of the oil. Watching him have intense and horrible seizures everyday was the worst kind of helplessness – knowing that nothing we were doing was really helping to stop them, despite being treated by world class medical professionals. His expenses for supports, medical supplies (syringes, incontinence products, suction supplies, gloves, medication copayments, lifts, slings, wheelchairs, bath seats, wheelchair van repairs, etc. etc.), paramedical treatments (massage therapy, physiotherapy, music therapy) are so incredibly high.
We are firm believers that everyone has a place of belonging in their community and have unique ways to contribute to society. Matthew lives at home. Most people with Matthew’s level of care needs live in chronic care hospitals. We couldn’t live with ourselves if that was his place of residence so we have done everything we could possibly do and sacrificed incredibly to enable him to live a “regular” life, to belong in the community as a citizen. He is forging a new path to belonging, and we hope our advocacy and other efforts will make it easier for other families to do the same for their loved one, so that heartbreaking choices should not have to be made because of a mess of ineffective policies and red tape that continues marginalize the most vulnerable of our society.
